The Fire

Every morning it’s the same thing, I wake up to my mouth, throat, and sinuses on literal fire. It’s become a daily challenge to stay focused on the balance of keeping up with work and the constant reminder that this isn’t over.

It’s been frustrating to say the least. I get ahead, to only be kicked right back down the stairs. This constant battle with my immune system just not working the way it’s supposed to is just a testament to how “real” this is.

Doctors have really let me down. Really since 2017, when the swallowing issues started, the random blackouts, the strange rashes. I’m pretty sure that the mold exposure just made all of this worse. The tumor wasn’t something I expected to experience, on top of the recurring sinus infections. Getting through the 3 years of constant sinus surgeries, each one just “testing” me more and more.

That’s what this whole “thing” has been, is a test of my internal fortitude, and patience with getting whatever this is under control. Every morning I constantly have to remove this crud from my face. Whether it’s bloody clumps from my sinuses, or the this white shit from under my tongue, the fire continues.

The shit sandwich that I constantly am forced to eat daily with all of this has really started to wear my patience thin. The pain control aspect of this feels like I’m on a rollercoaster from hell, with really no way off. Between the Dilaudid and the Ketamine, that’s really the only thing keeping me going and be able to do the things I’m able to do at work. My body feels like it’s constantly fighting this “thing” in my face, which I’ve shown several times to doctors that there’s something there. You can clearly see something under my tongue. Which I’m convinced it’s leftover shrapnel from the botched implants done in 2019. I should’ve never gotten them. Especially with a doctor that had 0 interest in making sure he did his job properly.

His focus was solely on covering up what happened during the procedure. I spent what, a solid year, and constant appointments to get someone to figure this out. Because he fucked up, I get to be the one who pays the penalty for his inability to do his job properly. I lost $17,000 in the process, which has literally led to the financial meltdown I’ve experienced since. Everything that could’ve gone wrong, continues to go wrong.

Dr. Sarid sees it. He understands how frustrated I am. Last week I met with him regarding Pemgarda. Which is the new monoclonal antibodies which help protect against COVID should I come in contact with it. Yes, I get some from the IVIg, but this will help. Since COVID is no longer a widespread threat, the FDA took away the previously approved therapy. Hopefully paragon can get me in with the next week or so and I can get this done.

I was supposed to see Hepworth last week, but last month he “divorced” Veros. Which I’m not sure what happened, but of course I get the short end of the deal. “Oh you can be seen but it would be out of pocket / cash rate”. I almost wanted to fucking say “am I made of fucking money?” I just grow tired of dealing with Hepworth’s front office. They have grown to be a difficult challenge. He’s a great surgeon / physician, but that gets ruined by the staff that’s being chosen to support him. I’m convinced it wasn’t Veros causing that. I can call and get an ASAP appointment with Sarid within the same day or next day, with Hepworth? LOL, try 3-6 months. And when I get to see him, I HAVE to bring my wife with to make sure I get listened to.

I’m just tired of doctors focused on symptoms and the effect, and not figuring out the cause. It’s a good business model to keep someone sick. Because they can just pump you for all you got. Which is why I’m staring down 85k worth of medical debt that shouldn’t have happened in the first place between the 5 years of black mold exposure, and the clear malpractice of Pomeranz and the implants.

The past 2 weeks have sucked. The weather continues to cause the barometric pressure to rollercoaster. The worst is when the storms instantly form within an hour, I can immediately tell it’s happening. My left ear begins to ring, then pulsate with pain. As the storm forms and approaches, the pressure just nose dives, and I can immediately feels its effects. Ever since the 1st mastoidectomy, I now have this “ability”. I don’t want it. It’s excruciatingly painful to experience on top of everything else I have to deal with.

Thankfully Ketamine is today @ 6pm. It helps with the pain tremendously. It allows my brain to reset. Calm down the chaos that chronic pain brings. I am so grateful that this treatment exists. I’m glad that insurance has stepped up to help somewhat, but billing continues to dodge me regarding sessions that were “supposed” to be covered. I am going to continuously bring it up until it’s fixed. I’m sure they don’t want to have another credit like I did last year, but this is something they created, and have to fix. I’m submitting the paperwork properly as I’ve always done.

I’m just hoping that soon I get some form of answers regarding the constant swelling and fire I have to deal with on a daily basis. I really want some form of “normalcy” in my life, but at the rate things are going, it’s really unclear when or if that will ever happen.

I’m just not going to give up yet.